A qualitative exploration of flourishing among
individuals diagnosed with HIV/AIDS in South
Africa
RL Tsotetsi
orcid.org/0000-0001-7028-2937
Mini-dissertation submitted in partial fulfilment of the
requirements for the degree
Masters of Arts in Medical
Sociology
at the Vaal Triangle Campus North-West University
Supervisor: Prof HW Nell
Graduation May 2018
I
DECLARATION
I Relebohile Lerato Tsotetsi hereby declare that the work contained in this dissertation is my own and all sources I have drawn on have been acknowledged by means of complete references.
………. Relebohile Lerato Tsotetsi
II
REMARKS
The reader is kindly requested to take note that this mini-dissertation has been written in the NWU approved article format, which consists of an introductory chapter, one research article containing the main findings of the study, and a final chapter outlining the conclusions, limitations, and recommendations pertaining to the study.
III
ACKNOWLEDGEMENTS
I would like to express my deepest gratitude and heartfelt appreciation to a number of people, without all of them I wouldn’t have been able to complete my dissertation.
Firstly, I would like to acknowledge The ALMIGHTY for carrying me throughout this journey, and also giving me the necessary strength to pull through even though it was challenging at times.
My supervisor Prof. Nell, for encouraging me and guiding me always. For assisting and placing me on the right path when I fell of a couple of times.
I would love to thank my mother Ntsamaeng Tsotetsi, for her undying support and financial backing throughout my process of completing this.
I would love to thank my best friend and partner Sesethu Nyokana for being optimistic for me and also lending a helping hand any time I needed it.
My sister, Puseletso Tsotetsi for the constant love and support throughout my journey.
Tokollo Hospital for allowing and trusting me to conduct the research at their facilities at times.
My two friends, Bulelwa Sephungu and Sam Mofokeng, for helping me with identifying the participants and all administrative work needed to complete the research.
Lastly, I would like to thank my spiritual parent Prof. Modupe Mohoje for the prayers and positive energy.
IV
ABSTRACT
Topic: A qualitative exploration of flourishing among individuals diagnosed with HIV/AIDS
in South Africa.
Key terms: Flourishing, HIV/AIDS, South Africa, well-being
This mini-dissertation presents the findings of a study that qualitatively explored flourishing among individuals diagnosed with HIV/AIDS in South Africa. A purposive extreme case sampling method was used to obtain 15 participants (7 male, 8 female) who were identified as flourishing via a combination of their CD4 counts and reports from their supervising physicians. All participants were from communities near Heilbron in the Free State province of South Africa, and made use of Tokollo Hospital as their health care facility. Data were collected by means of semi-structured interviews. Most interviews took place at the participants’ homes and a few took place at Tokollo district hospital over a three-month period from February 2017 to end of April 2017. Data were analysed by means of thematic content analysis. Eight main themes emerged from the data, which served to account for how individuals diagnosed with HIV/AIDS in South Africa are flourishing despite their diagnosis. In particular, acceptance of their diagnosis; having a positive outlook on life; taking responsibility for their condition; drawing strength from faith and religious activities; having supportive social relationships; having a future orientation; motivating and encouraging others with the same illness; and music were identified as those factors that contribute to flourishing among the participants. Furthermore, participants commonly mentioned that by accepting their diagnosis, they were able to take responsibility for their lives and choose to adopt a positive and healthy lifestyle for themselves, which involved eating a healthy diet, exercising regularly, and adhering to their medication regimens. Furthermore, these participants pointed out that their faith and religious practices keeps them hopeful and also optimistic for a better future. Also, they indicated that they did not perceive their diagnosis as all negative, because it allows them to motivate and serve as example to others who are facing the same challenges in life and who are not coping with their diagnosis. Most participants also noted that getting support from primary relationships such as family and friends also gives them more reason to continue on a positive journey and not be influenced by negativity from stereotypes, stigma and discrimination often associated with the disease. The mini-dissertation is concluded with a chapter outlining the conclusions, limitation, implications and recommendations as well as obstacles encountered during the course of the
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study. With this intention, it is also the researcher’s recommendation that more research be conducted to explore flourishing among a more diverse sample of HIV positive individuals. It is also recommended that the findings of the study be considered when developing interventions or providing training for HIV counsellors in order to assist patients that are languishing as a result of their diagnosis.
VI TABLE OF CONTENTS DECLARATION ... I REMARKS ... II ACKNOWLEDGEMENTS ... III ABSTRACT ... IV LIST OF TABLES ... IX CHAPTER 1 ... 1
INTRODUCTION, PROBLEM STATEMENT AND OBJECTIVES ... 1
1.1 Introduction ... 1
1.2 The HIV/AIDS pandemic ... 1
1.3 HIV/AIDS and stigma ... 3
1.4 Problem statement ... 3
1.5 Research questions ... 5
1.5.1 Main research question ... 5
1.5.2 Secondary research question ... 6
1.6 Research aims ... 6
1.6.1 Main research aim ... 6
1.6.2 Secondary research aim ... 6
1.7 Methodology ... 6 1.7.1 Literature review ... 6 1.7.2 Empirical Study... 6 1.7.3 Ontological philosophy ... 7 1.7.4 Epistemological philosophy ... 7 1.8 Research design ... 8
1.8.1 Participants and sampling ... 8
1.8.2 Data collection ... 10
1.8.2.1 Questions used to guide the interviews ... 10
1.8.3 Research procedures ... 11 1.8.4 Quality assurance ... 12 1.8.4.1 Credibility ... 12 1.8.4.2 Transferability ... 13 1.8.4.3 Dependability ... 13 1.8.4.4 Confirmability ... 13 1.8.5 Data analysis ... 13 1.9 Ethical considerations ... 14
VII
1.11 Summary ... 16
REFERENCES ... 17
CHAPTER 2 ... 23
RESEARCH ARTICLE ... 23
A QUALITATIVE EXPLORATION OF FLOURISHING AMONG INDIVIDUALS DIAGNOSED WITH HIV/AIDS IN SOUTH AFRICA ... 24
ABSTRACT ... 24
2.1 Introduction ... 25
2.2 Flourishing ... 25
2.2.1 Well-being and flourishing among individuals diagnosed with HIV/AIDS ... 27
2.2.2 Well-being and flourishing in South Africa among HIV positive individuals ... 28
2.3 Methodology ... 30
2.3.1 Participants and sampling ... 30
2.3.2 Data collection ... 32
2.3.3 Data analysis ... 33
2.3.4 Ethical considerations ... 34
2.4 Findings ... 35
2.4.1 Acceptance of the diagnosis ... 35
2.4.2 Positive outlook on life ... 36
2.4.3 Taking responsibility for the condition ... 37
2.4.3.1 Healthy living ... 38
2.4.4 Faith/religious activities ... 38
2.4.4.1 Praying ... 39
2.4.4.2 Reading the Bible ... 39
2.4.4.3 Viewing God as source of life ... 39
2.4.5 Social relationships ... 40
2.4.5.1 Family and friends support ... 41
2.4.5.2 Taking care of family ... 41
2.4.6 Government support ... 41
2.4.7 Future orientation ... 42
2.4.8 Motivating and encouraging others... 43
2.4.9 Music ... 44
2.5 Discussion ... 44
2.6 Implications of the findings ... 47
2.7 Limitations and recommendations ... 48
VIII
REFERENCES ... 50
CHAPTER 3 ... 54
CONCLUSIONS, LIMITATIONS AND RECOMENDATIONS ... 54
3.1 Introduction ... 54
3.2 Conclusions ... 54
3.3 Implications ... 58
3.4 Limitations of the study ... 59
3.5 Obstacles encountered ... 60
3.6 Recommendations for future research ... 60
3.7 Personal reflections ... 61 3.8 Summary ... 61 REFERENCES ... 63 APPENDIX A ... 0 APPENDIX B ... 1 APPENDIX C ... 2
IX
LIST OF TABLES
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CHAPTER 1
INTRODUCTION, PROBLEM STATEMENT AND OBJECTIVES
1.1 Introduction
This study aims to qualitatively explore flourishing among individuals who are diagnosed with HIV/AIDS in South Africa. As such, this chapter comprises a detailed step-by-step outline of the study and how the research was executed. Firstly, a literature review is provided, which will provide an overview of existing research related to the topic, and which will also clarify important terms and concepts relevant to the study. The literature review will be followed by an outline of the research questions and aims that guide the study. The theoretical framework that has been chosen to frame the study will then be discussed. The research methodology applicable to the study will be elucidated next. The methodology will comprise the research design, sampling procedures, data gathering methods as well as an outline of the method of data analysis applicable to the study. Trustworthiness and quality assurance of the study will be explained next, followed by a discussion of the ethical issues that are relevant to the present study. This chapter will then be concluded by an outline of the chapters of the mini-dissertation.
1.2 The HIV/AIDS pandemic
The Human Immunodeficiency Virus (HIV) has changed lives immensely across the world over the past 30 years (Hessol et al., 2007:1144). The virus broke out on a significant scale in 1981 when the United States of America officially recognized an uncommon illness among a small group of gay men. The disease affects all ages, sexes and races due to multiple transmission factors. HIV is passed from one person to another by means of blood-to-blood or sexual contact. The virus depletes the functioning of the T-helper lymphocytes also known as the CD4 cells (ILO, 2014:3). The CD4 cells are the major target of viral infections and they circulate within the blood. An untreated person would experience weakening of cells (Hessol et al., 2007:1144; ILO, 2014:3). In the case of loss of an effective immune response to the allocated opportunistic pathogens, the HIV infection progresses into Acquired Immune Deficiency Syndrome (AIDS), which is of great concern, as it is widely spread across the world, and is a disease of great demographic diversity (Hessol et al., 2007:1152).
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The pandemic continues to spread around the world without full control in any country (Lawson et al., 2006:4). The disease is estimated to have infected over 58 million people worldwide and is rated as the fourth leading cause of mortality globally. An alarming 95% of people infected in the world are said to be in sub-Saharan Africa. The AIDS epidemic is said to have caused more fatalities than malaria in Africa (Lawson et al., 2006:4). The pandemic is not only a heavy burden for people who have the disease but it also affects families as many children are left orphaned. Complicating matters further is that HIV/AIDS is often accompanied by other sexually transmitted diseases, which are said to hinder the control of HIV itself (Lawson et al., 2006:4).
South Africa is known as one of the leading countries in HIV/AIDS research in relation to the treatment and the prevention of the disease (Shisana et al., 2014:3). The comprehensive and long-term research in this country has produced significant amounts of statistical data on the prevalence and incidence of HIV/AIDS, and also on anti-retroviral treatment (ART). Conjointly, there has also been a rising awareness with regards to socio-behavioural and structural conditions that contribute to the spread of HIV infections in the population (Shisana et al., 2014:3; Stats SA, 2014:6). An overall percentage of 16.9% of children between the ages of 0-18 years have been orphaned in South Africa with 18.9% of the children being from black African communities. As a result of socio-behavioural risks, the young women in South Africa prove to be at risk of HIV infections because of age-disparate relationships they enter into (Shisana et al., 2014:4). Likewise unmarried persons are said to be at higher risk than married people because of higher percentages of unmarried people with multiple partners (Shisana et al., 2014:4).
Statistics South Africa reported an overall estimate of 10.2% HIV prevalence in the South African population in the year 2014 (Stats SA, 2014:2). The estimated number of people living with HIV in South Africa in 2014 was approximately 5.51 million, with adults aged 15-49 years estimated to make up 16.8% of the population. Reports have shown a decline in AIDS deaths compared to 2005 figures, which is mainly attributed to the increase and distribution of antiretroviral treatment “ART” (Shisana et al., 2009:63). The South African government, supported by international partnerships and civil society mobilisation, are investing ever more in evidence-based treatment and preventative strategies in response to the epidemic.
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1.3 HIV/AIDS and stigma
Societies across the globe encounter an array of negative and inaccurate ideas spread about HIV/AIDS (Shisana et al., 2009:71), which commonly brings into existence stigma and discrimination (Meiberg et al., 2008:50). Stigma refers to disapproving feelings people have about a particular illness and ways of behaving (Lawson et al., 2006:8). Individuals who are stigmatised are either blamed or marked as being different from other people (Lawson et al., 2006:4). Such people can even be insulted, rejected, gossiped about and also excluded from social activities (Meiberg et al., 2008:50). Discrimination on the other hand is defined as the practice of treating somebody, or a particular group in society less fairly than others. The act of discrimination commonly denies people the right to vital information and/or services that protect them against HIV infection, as well as the receiving of appropriate treatment, care and support (Meiberg et al., 2008:50).
In South Africa, HIV positive individuals still encounter psychosocial factors such as denial, stigma, and lack of support and resources, which has been found to be significantly associated with the onset of mental health problems such as depression (Anderson & Seedat, 2009:12). Furthermore, individuals diagnosed with HIV/AIDS not only encounter difficulties with the virus, and with attendant mental health challenges, but also often face discrimination from their partners and the family members they live with. The stigma of HIV/AIDS then leads to loss of social support and isolation (Louwrens, 2014:4). The discrediting of an HIV-positive person or group often results in a situation where such individuals are denied services important to their lives, and where their human rights are violated (Stangl et al., 2013:1; Katz et al., 2013:1).
1.4 Problem statement
Numerous studies have been conducted globally on the HIV/AIDS pandemic, and most of these studies tend to focus on the negative outcomes associated with HIV/AIDS such as stigma (Lawson et al., 2006; Meiberg et al., 2008). Promotion and prevention strategies have also been a primary focus in the context of the research that has been conducted (WHO, 2002:2; UNAIDS, 2010:5; Coates et al., 2008:671). As a result of the vast research, the World Health Organisation (WHO) published a guide to nutritional care and support for people living with HIV/AIDS (WHO, 2002:2). Other crucial research includes looking at individuals receiving antiretroviral therapy and having difficulties sticking to their current
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programme, their satisfaction with social support, coping styles and punishment beliefs about HIV/AIDS (Safren et al., 2002:478; UNAIDS, 2000:5; Kotzé, 2011:24; Haruna & Ago, 2014:78). As such, the emphasis of much existing research has been on the challenges associated with HIV/AIDS and on the treatment and prevention of the disease. As such, although voluminous research has been conducted on HIV/AIDS, comparatively not much research has specifically focused on well-being and flourishing among people living with HIV/AIDS.
As conceptualized in this study, flourishing refers not just to the absence of symptoms of ill mental health and illness, but to the prominence of mental health symptoms (Baumgardner & Crothers, 2007:270). Flourishing is comprised of two components, namely hedonia (‘feeling good’), and eudiamonia (‘functioning well’) (Wissing et al., 2014:8). The feeling good dimension involves that an individual is satisfied with his or her life and experiences more positive than negative emotions. The second dimension of ‘functioning well’ entails that the individual experiences meaning in his or her life, has harmonious relationships with others, is self-determined, has good social relations and is optimistic (Wissing et al., 2014: 255). The experience of autonomy, experiencing satisfaction with life, having hope and resilience and having purpose and finding meaning in life are basic factors that lead to flourishing (Wissing
et al., 2014:225). To be diagnosed as flourishing, therefore, an individual should exhibit
convincing amounts of both eudaimonia and hedonia (Keyes, 2007:98).
At the opposite end of the continuum from flourishing there is languishing, which is a state in which an individual lacks positive emotions towards life. Such a person is not functioning well psychologically or socially and has been depressed recently (Van Schalkwyk, 2009:10). People who have been diagnosed with HIV/AIDS are more likely than those not diagnosed as such to develop mental health problems like depression and anxiety (NAT, 2010:3).
A review of existing literature reveals that a comparatively limited number of international studies have been conducted on well-being and HIV, with a number of them focussing on factors such as psychological well-being and the impact of social support for diagnosed individuals. One study on flourishing HIV individuals was conducted on HIV-positive Australian gay men, and in it the researchers found that the gay men generally flourished despite their diagnosis, though they concluded that there is still a need for resilience programs to help diagnosed individuals in the future (Lyons et al., 2016:3). Another study explored HIV self-management and well-being among people taking antiretroviral therapy in Uganda
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(Russell et al., 2016:92). The particular study found that individuals were managing their condition well in psychological, social and emotional well-being (Russell et al., 2016:92). Despite these studies, comparatively little research has thus far been conducted on flourishing amongst individuals diagnosed with HIV/AIDS, especially in South Africa (Van Schalkwyk, 2009:6). A review of journals published and not published via databases such as Ebscohost, Google Scholar and other sources were consulted but virtually no research could be located that expressly focused on flourishing amongst individuals diagnosed with HIV in South Africa, which represents a significant gap given the unique and diverse cultural profile of this country. Given that values, beliefs and norms pertaining to illness and illness behaviour commonly vary across cultures (Cockerham, 2001:158), findings from previous studies done in other contexts cannot be indiscriminately generalised to the South African context, and a need exists for contextually sensitive investigation of the topic. Acquiring some understanding on how individuals diagnosed with HIV/AIDS are flourishing could yield many benefits. Firstly, the findings from a study such as this might be fruitfully employed to inform and guide the development of strategies and interventions aimed at helping those who seem to not flourish after they are diagnosed with HIV/AIDS. Secondly, this will allow for a better understanding of how such individuals are able to flourish in spite of stigma and discrimination. Such information might be useful to therapists and counsellors working with individuals who have contracted HIV/AIDS. These include lay counsellors who provide pre-diagnosis counselling for individuals, counsellors and psychologists who have to provide therapy for HIV-positive patients, as well as nurses and doctors working with individuals diagnosed with this condition.
1.5 Research questions
1.5.1 Main research question
Based on the discussion in the previous section, the following main research question was formulated to guide the present study:
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1.5.2 Secondary research question
What are the factors that contribute to flourishing amongst individuals diagnosed with HIV/AIDS?
1.6 Research aims 1.6.1 Main research aim
The general aim of this study is to qualitatively explore flourishing amongst individuals diagnosed with HIV/AIDS.
1.6.2 Secondary research aim
To explore the factors that contribute to flourishing amongst individuals diagnosed with HIV/AIDS.
1.7 Methodology
1.7.1 Literature review
The literature review for this study entailed reading and analysing the available scholarly writings on the research topic, which guided the overall direction of this research process (Hofstee, 2006:91). The available literature was sought through official publications, dissertations, published theses, newspaper articles, newsletters, general web pages, reviewed journal articles and other informal reports, as recommended by Krueger (2012:9). These were sought on databases such as Ebscohost, Sabinet, and Google Scholar, library books, JSTOR and more. To guide the search the following key words were used: flourishing, HIV/AIDS, well-being, psychological well-being, eudaimonia, hedonia, meaning in life, after-diagnosis, resilience, etc.
1.7.2 Empirical Study
The current study aims to explore flourishing amongst participants diagnosed with HIV/AIDS. This is best accomplished by studying the participant’s personal knowledge and understanding of themselves. A qualitative approach will therefore be adopted for the study.
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A qualitative approach is concerned with achieving in-depth understanding of individuals’ subjective realities and experiences, and involves turning a specific study into a series of representations including field-notes, interviews, photographs and memos to the self (Denzin & Lincoln, 2000:3). A qualitative approach is a way of examining the “how” and “why” of a phenomenon studied not just what, where, when or who (Denzin & Lincoln, 2000:3). It aims at making sense of and interpreting the phenomena which are explored according to the meanings people attach to it. The aim of the present study, which explores flourishing among individuals diagnosed with HIV/AIDS, is to achieve an understanding of each participant’s case and his or her subjective thoughts, views and experiences of flourishing after finding out about their diagnosis, and a qualitative approach is well-suited to this type of exploration of subjective phenomena (Welman et al., 2005:7).
1.7.3 Ontological philosophy
Ontology is a term that is used to refer to the assumptions made about the nature of (in this case, social) reality (Crix, 2002:176), and includes what we believe to be reality and what is out there to know. An interpretivist ontology will be used in the present study. The exploration of flourishing amongst individuals diagnosed with HIV/AIDS in South Africa is concerned with subjective realities of participants. An interpretivist ontology assumes that knowledge and meaning are acts of interpretation and that there is no objective knowledge which is independent of thinking, reasoning humans (Cuba & Lincoln, 1989:83). This implies that phenomena will be understood through meanings that people assign to it (Cuba & Lincoln, 1989:83). The study of flourishing among individuals diagnosed with HIV/AIDS is concerned with individuals’ subjective experiences, perspectives, and views in relation to their own well-being. As such, an interpretivist ontology is ideally suited to explore these participants’ realities from an ‘insider’, subjective point of view.
1.7.4 Epistemological philosophy
Epistemology is concerned with how one can know about the reality that is spoken of in ontological philosophy (Crix, 2002:177). Therefore, it refers to the theory of knowledge - the methods, validity and possible ways of gaining knowledge of social reality and what it is understood to be. Social constructivism served as epistemological foundation for the current research, which focuses on exploring flourishing amongst individuals diagnosed with
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HIV/AIDS. This approach acknowledges that there exists multiple, socially constructed realities in relation to the research topic, which are explored through shared investigation by both the researcher and the participants (Ritchie & Lewis, 2013:13). In this study, the researcher wishes to explore the subjectively constructed accounts of flourishing among HIV positive individuals.
1.8 Research design
The general aim of this study is to explore and also understand how and why some individuals diagnosed with HIV/AIDS flourish in spite of the fact that many others are just barely coping or not coping at all. The study is therefore qualitative and exploratory (Maree, 2007:267). To achieve a rich understanding of the lives of HIV/AIDS diagnosed individuals who are flourishing, the researcher needs to go deeper into their world. A case study of each participant would help to obtain an in-depth understanding of their experiences, feelings and thoughts (Zach, 2006:5). A single case however would not have yielded an understanding of the commonalities or differences there might be between the participants (Zach, 2006:9). A multiple case study design addressed these limitations as it meant that conclusions gathered from one case should be compared and contrasted with the results from the other cases (Bengtsson, 1999:9). Multiple case study designs generally involve the study of various units within identifiable cases (Bengtsson, 1999:9). Conclusions from case studies alone are not enough, so multiple case studies typically yield more robustness to the conclusions of the study (Bengtsson, 1999:2). The conclusions drawn from one individual flourishing whilst diagnosed with HIV/AIDS have therefore been compared with the results drawn from the other cases to provide a more credible set of findings, as is typical with this type of approach (Bengtsson, 1999:2; Zach, 2006:9).
1.8.1 Participants and sampling
As the study is qualitative in nature, a purposive sampling method was used. More specifically, in identifying and recruiting participants needed to fulfil the purpose of the research study, an extreme case sampling method was used. This method entailed purposefully selecting those individuals diagnosed with HIV/AIDS who are doing exceptionally well despite the diagnosis. Extreme cases represent participants exhibiting clear-cut and unique instances of a phenomenon a researcher is interested in (Palys,
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2008:697). In line with the purposive sampling strategy that has been adopted, the following sampling criteria were set for the study:
Firstly, participants should be diagnosed with HIV/AIDS, and should have been aware of this diagnosis for at least two years or more.
Second, the participants must (through the records provided) show a stable CD4 count (not a drop below 200 or otherwise), that will help in determining whether the participant is likely feeling good and functioning well in their lives. This strategy was adopted on the basis of the fact that CD4 count levels of less than 200 generally mean that there is damage in the immune system, which likely (though by no means certainly) indicates that the individuals are likely not functioning well in their lives. Conversely, a higher CD4 count is associated with better well-being (Sabin & Phillips, 2009: 193).
Third, participants must be identified by some health care professional (such as a medical doctor, psychologist, professional counsellor, social worker, etc. who is familiar with the participants’ case history) as flourishing. The identification of flourishing participants by the health professionals was deemed as a workable (though admittedly not perfect) strategy given that they have been monitoring the progress of their patients from the time of diagnosis, and are therefore familiar with the patient’s level of functioning to some degree. By combining CD4 count information with the recommendations of health care professionals as well as the self-reported incidence of flourishing by the participants, the likelihood of obtaining participants who are truly flourishing is significantly enhanced.
Fourth, the participants must be accessible from the records of the Tokollo Hospital, where the study will be conducted.
Lastly, participants must be older than 18 years of age.
Data were collected in Heilbron at the local hospital, namely Tokollo Hospital, as this hospital is accessible to the researcher. Though a small town in the Free-State, this hospital provides health services for 2 other neighbouring towns, namely Petrus Steyn and Edenville, and as such, is the primary provider of HIV/AIDS related services in the region. Tokollo Hospital is a community hospital and the only hospital in Heilbron, though there are a number of clinics too. The hospital is situated in town, which is not far from the township. It is situated in a quiet neighbourhood, with good security and dedicated staff. Patients at this
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hospital are predominantly black, with significantly smaller numbers of coloured patients, and an even small number of white patients.
1.8.2 Data collection
Semi-structured interviews were used in order to acquire the required data from the participants who were selected. Interviews are usually conducted with people to find out from them those things that cannot directly be observed. Patton (2002:341) suggests that the purpose of an interview is to allow the interviewer into the perspective of the other person. Semi-structured interviews are appropriate when aiming to explore the perceptions and also opinions of respondents, and are commonly used in the context of qualitative research (Barriball & While, 1994:330). This method of data gathering enables researchers to understand complex and also sensitive issues, and also enabling them to probe for clarification and more information (Barriball & While, 1994:330). As such, this data collection method was deemed to be well-suited to the exploratory nature of the present study.
1.8.2.1 Questions used to guide the interviews
Semi-structured interviews are commonly facilitated by means of an interview guide, which is comprised of a series of (usually open-ended) questions pertinent to the research topic (Tracy, 2013:131). In the case of exploring flourishing amongst individuals diagnosed with HIV/AIDS open-ended questions were asked in order to elicit lengthy and meaningful responses from the participants. Open-ended questions give the researcher the ability to learn the interviewees’ thoughts and judgements, and also capture the complexities of his/her individual perceptions and experiences (Patton, 2002:348).
The following questions guided the interviews.
Question 1: What are the factors that contribute positively in your life and enable you to do so well in life despite your diagnosis?
Question 2: Why would you say that you feel good and function well in your life?
Question 3: What, if anything, do you do to make sure that you are healthy emotionally and physically?
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Question 4: Do you have any goals you plan on achieving in your life, and if so, how are they different from before you knew your status? Why is this?
Question 5: Have you ever encountered any stigma and/or discrimination from others because of the disease? If so, how did you deal with this? (If participants were found to be able to maintain a positive attitude despite such stigma, they were asked to explain how they managed this).
Question 6: Knowing that you are living with HIV/AIDS, what enables you to still say that you are doing well/satisfied with your life?
Question 7: Now that you know that you are living with the disease, how do you see the future? What plans do you have?
Question 8: When things are not going well for you, what do you normally do to get back on your feet?
Question 9: What gives your life meaning/purpose? How do you sustain this meaning?
When conducting the interviews, care was taken to ensure that no question was phrased in a way to suggest that one answer is more likely or preferable to another answer. In order to get clarity, completeness or additional information, additional probing was used as necessary. A probe is generally used to encourage the conversation without the interviewer influencing the answer (Patton, 2002:348). Examples of probing questions that were asked include:
“Can you explain more?” “What do you mean by…?”
“What other reasons do you think contribute to…?”
1.8.3 Research procedures
As soon as permission was received to work at Tokollo Hospital from the CEO of the hospital (see Appendix A), formal permission to conduct the study was sought and obtained from the NWU Human Health Research Ethics Committee (see Appendix B). The head social worker was then approached to assist with the identification of patients who exhibit indications of flourishing. The aim and what the study is about were thoroughly explained to all prospective participants, and they were informed as to how the study was to be conducted,
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how long the interviews would take and were given extensive information about the ethical matters related to the study. The informed consent forms (see Appendix C) were handed out to the participants after these explanations, and they were given a cooling down period of 24 hours in order to decide on whether or not they wished to take part in the study. Once the signed informed consent forms had been obtained, the interviews were then conducted at Tokollo Hospital (in the office of the social worker, which was quiet, private, and free from distractions) at a time that was convenient to the participant. This typically coincided with their regular visits to the clinic, so as to avoid a situation where the participants had to incur any additional travel expenses. In some cases however, participants expressed the wish to be interviewed at their homes, in which case the researcher conducted the interviews at the participant’s residence at a time that was convenient for them. The interviews were recorded electronically (with participant consent) and the recorded data were transcribed and subjected to thematic qualitative analysis. The data gathering and analysis were done iteratively until theoretical saturation is achieved.
1.8.4 Quality assurance
In order to enhance trustworthiness and also quality-based research, the researcher sought to adhere to a number of important criteria of trustworthiness, which include credibility, transferability, dependability, and confirmability.
1.8.4.1 Credibility
Credibility refers to the internal consistency of findings about a phenomenon, how rigour is maintained and how the researcher communicates how he or she was able to do so (Morrow, 2005:252). Credibility in the current study was ensured by reflexivity, which entailed keeping reflective notes in which the researcher reflected on her own position in the research as well as the research process itself. This was followed by member checking where the researcher returned to the participants and verified findings with them. Finally, linking the findings of the study to other research findings was done, following the recommendations outlined by Morrow (2005:252).
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1.8.4.2 Transferability
Transferability means that the findings of one study can be applied to other situations (Shenton, 2004:69). Although every case might be unique it is also an example within the broader group (Shenton, 2004:69). So for transferability to be achieved in this study, I, the researcher, sought to provide sufficient information about myself as an instrument, and the research context, the process, the participants and relationship with the participants in order to enable the reader to make an informed decision as to the extent to which the research findings might be transferable to the contexts they are seeking to understand (Morrow, 2005:252).
1.8.4.3 Dependability
Dependability implies that the study at hand should be conducted in a way so that it will be consistent across time, researchers, and the data analysis techniques that will be used (Morrow, 2005:252). This means that if the work were to be repeated, in the same context, with the same methods and with the same participants, similar results would be obtained (Shenton, 2004:71). In order to ensure dependability in the study at hand a detailed description of research activities and processes were provided. Factors influencing all stages of the research process have been clearly outlined.
1.8.4.4 Confirmability
Confirmability implies that research is never objective and it addresses the core issue that findings should represent the situation being researched rather than the beliefs of the researcher and also not the researcher’s biased interpretations (Morrow, 2005:252). Confirmability in this research has been accomplished by means of recording and creating verbatim transcriptions of the interviews and by providing quotations from the interviews to illustrate findings. Member checking further served to mitigate the likelihood of biased interpretations of the results.
1.8.5 Data analysis
Data analysis methods help to describe facts, detect occurring patterns, and develop explanations. Judd et al. (1991:360) elaborate on this by saying that the purpose of analysis is
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to summarise the data that were observed and collected to such an extent that they answer the research questions. Data can be analysed in different ways to achieve sensible results, and the method of data analysis that was used in this study was inductive thematic content analysis. More specifically, the researcher followed the processes proposed in Braun and Clarke (2006:87) in conducting the analysis. The researcher listened to the audio recordings from each participant’s interview and transcribed it word for word. Following the transcription process, the researcher read through the textual data several times, and then the data was segmented according to the units of meaning they contained, and subsequently coded. This involved assigning a descriptive label to the text that describes the essence of the segment of text as it relates to the research topic. The identification of codes was refined several times in order to generate a coherent and comprehensive set of codes. All the codes that were redundant were deleted and/or merged with other codes as appropriate. Codes that exhibited a high degree of conceptual overlap were similarly merged. After identifying the meaningful codes on the text, the researcher grouped the codes into meaningful categories and overarching themes that encapsulated the essence of the study’s findings.
1.9 Ethical considerations
Qualitative research entails close contact with humans, and consequently such interactions might elicit unwanted personal feelings and memories. As such, Brinkmann and Kvale (2008:269) state that ethical issues are a crucial part of the research process from conceptualisation to finalisation. This is especially so in the present study as the topic of HIV/AIDS is particularly sensitive. Vulnerable people, who disclosed personal details about their lives, participated in the research. When dealing with such participants, it is proposed that the researcher should also obtain permission, do research of high quality and share their results after the research (Brinkmann & Kvale, 2008:269), as has been done in the present study.
Exploring flourishing amongst individuals diagnosed with HIV/AIDS is a sensitive matter because personal information will be disclosed to the researcher (Welman et al., 2005:195). There are usually three stages when conducting a study where ethical considerations come into place: when participants are recruited, during the intervention, and when the results are released (Welman et al., 2005:181). Four ethical considerations fall into place when working with human participants namely: informed consent, the right to privacy, protection from harm, and the involvement of the researcher (Welman et al., 2005:201). The study of
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exploring flourishing amongst individuals diagnosed with HIV/AIDS followed ethical processes usually followed in social research aimed at addressing these ethical considerations (Huysamen, 1994:180).
The hospital was approached to inquire about conducting the research there. The researcher therefore disclosed the objectives, the topic and the aim of the research to the management of the hospital (Welman et al., 2005:195). Written permission was obtained from the hospital to conduct the research (Welman et al., 2005:195). The study required a closed venue and a place where participants could freely express themselves without concerns of being overheard in order to ensure confidentiality. Therefore, a closed venue was provided by the hospital in an office used by the social worker at the hospital. The participants were given necessary information about the topic and the aim of the research at hand and also what the researcher aims to accomplish with the research at hand (Welman et al., 2005:201). The information was issued prior any interviews. Potential participants were then explained to that they would be provided with a consent form which would be signed by those participants who agree to take part in the study. As is typical of such documents (Patton, 2002:407), the consent form highlighted the purpose of collecting the data; who the information is for; how the information will be used and what will be asked in the interviews; how confidentiality would be assured and what the risks and benefits associated with their participation in the study were. It was also clearly explained to potential participants that they were free to withdraw from the study at any given time (Patton, 2002:407).
The signed informed consent letters were retained as proof that the participants agreed to take part in the study and also they understood all that was explained to them about the study at hand (Patton, 2002:409). Following signed consent, interviewing took place. The participants were free to make judgements about the nature of the questions asked and judged for themselves if they were comfortable in answering them (Patton, 2002:407). The password protected recordings and transcripts of the interviews were subsequently securely stored on the researcher’s laptop. The participants who have opted so will receive feedback on the findings of the study. The participants were assured of confidentiality explaining that their names and identities will not be disclosed in the final mini-dissertation or in any other context (Welman et al., 2005:196).
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1.10 Chapter division of the mini-dissertation
This dissertation will be written in the article format (as approved by the NWU), and will comprise the following chapters:
Chapter 1: Introduction, problem statement and objectives
Chapter 2: Article: A qualitative exploration of flourishing among individuals diagnosed with HIV/AIDS in South Africa
Chapter 3: Conclusions, limitations and recommendation
1.11 Summary
The aim of this introductory chapter was to provide contextual information relevant to the study on which the mini-dissertation is based. The chapter began with a review of the HIV/AIDS disease and its impact in the lives of the individuals diagnosed, followed by an overview of the term flourishing and the factors that contributes to flourishing. Next, the research aim guiding the study was outlined, which involves the exploration of flourishing among individuals diagnosed with HIV/AIDS in South Africa. Following this, the ontological, epistemological, and theoretical frameworks guiding the study were discussed. Then, the methodology that was followed in the study was outlined, after which ethical issues pertinent to the study were discussed. The findings for this study are presented in a research article format (which is in accordance with the article format as specified by the NWU) in the next chapter. Finally, the third chapter comprises of a detailed summary of the implications, limitations, recommendations, and reflections relevant to the study.
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CHAPTER 2
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A QUALITATIVE EXPLORATION OF FLOURISHING AMONG INDIVIDUALS DIAGNOSED WITH HIV/AIDS IN SOUTH AFRICA
ABSTRACT
The main aim of the study which informed this article was to qualitatively explore flourishing among individuals diagnosed with HIV/AIDS. Semi-structured interviews with 15 purposively selected flourishing HIV positive participants (7 male, 8 female), and who made use of Tokollo District Hospital in the Free State province of South Africa as their health care facility, were used to gather data for the study. Data were analysed by means of thematic content analysis. Eight main themes emerged from the data, which served to account for how individuals diagnosed with HIV/AIDS in South Africa are flourishing despite their diagnosis. In particular, acceptance of their diagnosis; having a positive outlook on life; taking responsibility for their condition and adopting healthy lifestyle habits such as a good diet and regular exercise; drawing strength from religious faith and activities; having supportive social relationships; having a future orientation; motivating and encouraging others suffering from the same condition; and music were identified as those factors that contribute to flourishing among the participants. The article is concluded with the recommendation that more research be conducted to explore flourishing among a more diverse sample of HIV positive individuals. It is recommended that the findings of the study be considered when developing interventions or providing training for HIV counsellors in order to assist patients who are languishing as a result of their diagnosis.
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2.1 Introduction
Being diagnosed with HIV typically brings about negative consequences in a person’s life, not only on a physical level, but also mental health conditions such as depression and anxiety. Moreover, being HIV positive can have a negative impact on various parts of persons’ lives. For example, they could become overwhelmed by the diagnosis, and commonly they experience a lot of negative emotions such as anger and fear (Gilbert et al., 2014:2). As such, HIV involves not only the body, but it may also adversely affect one’s emotional well-being, relationships, self-image, and behaviour (Cockerham, 2001:157). Despite this, a number of people living with HIV have proved to not only not be depressed about their status regardless of the many negative circumstances they might face, but to actively thrive in spite of their diagnoses (Russell et al., 2016:92; Mavandadis et al, 2009:93). Even with this, there is not much written about flourishing among individuals diagnosed with HIV/AIDS in South Africa. Therefore, there’s a need to explore flourishing among individuals diagnosed with HIV/AIDS in South Africa in order to support the development of effective programs to support HIV positive patients.
Several international studies have been conducted with regard to well-being, flourishing and the factors that signify flourishing in individuals (Van Zyl & Rothman, 2012:380). A few of these studies conducted internationally were on the well-being and flourishing of people diagnosed with HIV/AIDS. However, these studies tended to focus on specific sub-groupings among those diagnosed, were quantitative in nature, or did not explore flourishing among HIV diagnosed individuals (Huppert & So, 2013:840). Moreover, no studies could be located that examined this phenomenon in a South African context; and not many studies approached the topic from a qualitative perspective. The present study is thus aimed at addressing these gaps by undertaking a qualitative exploration of flourishing among individuals diagnosed with HIV/AIDS in South Africa.
2.2 Flourishing
Purported to be an end state in positive psychology, flourishing is a desired state by individual human beings, though some research argues its attainability (Keyes & Annas, 2009:199). Flourishing is an optimal state of well-being that involves more than merely the absence of ill-being. Flourishing is defined as having high levels of both hedonic and eudiamonic well-being (Keyes & Annas, 2009:198). The hedonic component consists of
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subjective and emotional wellbeing, and how satisfied an individual is with his or her life, whilst the eudiamonic dimension represents the degree to which an individual is functioning well (Wissing et al., 2014:8).
Opposing flourishing there is languishing, where individuals are not functioning well in their lives (Cilliers & Flotman, 2016:3). In order to flourish, a person needs to be well emotionally, psychologically and socially (Basson, 2015:98). Persons who do not flourish are at a significantly greater risk of mental health problems than persons who do flourish (Keyes, 2002:212). Therefore, researchers across the world developed an interest in the concept of flourishing. In as much as there is an increasing interest with regards to flourishing, not much qualitative research has been conducted on how, if at all, individuals are flourishing despite being diagnosed with HIV/AIDS, particularly in an African context. Most research done on the benefits of well-being and flourishing originates from the United States of America (Keyes & Annas, 2009:199).
A study done in Europe with 43000 respondents suggests that there are three factors that determine flourishing (Huppert & So, 2013:850). The first factor identified represented positive emotions. The second factor is clustered into five dimensions namely: emotional stability, vitality, optimism, resilience and self-esteem. Then, factor three is comprised of engagement, competence, meaning and positive relationship (Huppert & So, 2013:850).
In addition, Keyes & Annas (2009) suggests that for an individual to be defined as flourishing they must possess positive psychological, emotional and social well-being. He defines each concept in terms of understanding if an individual is satisfied with their lives and why they are satisfied. The first construct, psychological well-being, suggest that an individual has positive relations with others, is willing to grow personally, is in tune with his/her environment, has a purpose for his or her life and exhibits full self-acceptance (Huppert & So, 2013:3). Ryff (1989) further indicates that psychological well-being can be identified by self-acceptance; positive relations with others, autonomy, environmental mastery, purpose in life and personal growth.
The second construct, social well-being, occurs when individuals experience a sense of fitting in well in their communities. This means that an individual should be aware of their environment, be able to evolve positively, have positive relations with others, and have a positive attitude and perceived evaluation towards their society (Van Zyl & Rothman, 2016:140).
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The third construct, emotional well-being, is mostly indicated by the following three aspects which include the presence of positive affect, the absence of negative affect (which are referred to as an individual’s affect balance when considered comparatively), and perceived satisfaction with life (Keyes, 2002:212). In relation to health, emotional well-being promotes a healthy lifestyle such as increased physical activity and motivation for self-care (Ostir et al., 2000:473).
2.2.1 Well-being and flourishing among individuals diagnosed with HIV/AIDS
Being one of the global epidemics, HIV/AIDS affects people of different genders, races and ages (Lyons et al., 2016:7). People living with the disease are advised (from the time of diagnosis) to take care of themselves and maintain healthy lifestyles, which includes taking their medication to help with the process. In a study on resilience and flourishing among people living with HIV/AIDS, Lyons et al. (2016:7) found that in all cases of the gay men that participated in the study, there was a high level of positive well-being among them despite the challenges of living with their diagnosis.
Furthermore, a study by Mavandadis et al. (2010:92) in Philadelphia explored psychological well-being among individuals ageing with HIV, and also examined the value of social relationships. The study utilized a heterogeneous sample of adults diagnosed with HIV infection, seeking to explore associations among age, various dimensions of social support, and psychological and functional well-being. The authors found that older adults reported significantly lower depression symptoms, greater positive affect, and were less likely to report seeing a behavioural health specialist than their younger counterparts (Mavandadis et
al., 2010:92)
On the other hand, a study done by Chi and Li (2013:2558) explored the impact of parental HIV/AIDS on children’s psychological well-being in Detroit, USA. The authors found that individual coping skills, trusting relationships with caregivers, and social support tend to protect children against the negative effects of parental HIV/AIDS. Moreover, risk factors that might cause negative outcomes were suggested to be stressful events, stigma and poverty Chi & Li, 2013:2558).
Another study conducted by Russell et al. (2016:3) examined self-management and well-being among HIV diagnosed individuals. The study was conducted with 38 people living with HIV in Uganda’s Wakisa district. The findings revealed that the health of people living
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with HIV as well as the sustained success of antiretroviral therapy programmes depend on the motivation and ability of patients to self-manage the condition over a long term, including adherence to drug-regimens on a daily basis. Furthermore, the authors indicated that successful management of HIV sustains well-being, and that well-being is in turn likely to motivate continued self-management (Russell et al., 2016:2). Even though the authors found that many participants who were involved in the study were struggling economically, the recovery of their functional health and the hope they placed on anti-retroviral treatment had enhanced their well-being and increased their motivation to engage in effective self-management (Russell et al., 2016:2). Moreover, the authors found that the majority were managing well across different domains, namely, mobilizing resources through good relationships with health workers, and also, developing a network of support through contacts received at the antiretroviral clinic (Russell et al., 2016:2).
2.2.2 Well-being and flourishing in South Africa among HIV positive individuals
Mental illness has become the second largest disease burden in the world. Languishing persons have a greater chance to develop a mental illness than flourishing persons with a history of mental illness. Flourishing and moderately mental healthy individuals have been found to generally exhibit high levels of psychological functioning (Basson, 2015:65). In South Africa, it has also been found that flourishing individuals function better psychologically than individuals who are languishing or are moderately healthy (Basson, 2015:89).
With the benefits of flourishing, it is consequently important to not only focus on negative aspects leading to languishing, but to explore and establish inherent capabilities of flourishing among HIV/AIDS diagnosed individuals in order to assist those moderately coping and languishing. Keyes (2008) as cited in Basson (2015:101) exclaims that there is a low rate of flourishing among adults in South Africa of about 20% of the population (Basson, 2015:98). However, currently, little information is available regarding flourishing of HIV/AIDS diagnosed individuals. As such, more information is needed regarding the prevalence of flourishing as well as the factors that contribute to flourishing among HIV/AIDS diagnosed individuals (Basson, 2015:86).
Flourishing has benefits for the individual, the society and the work place (Basson, 2015:101). Whether individuals flourish or not might be due to differences in their internal
